Using the PACE data for baseline costs (just for CBT, but the other 3 groups were similar), which is £21,600 higher than that for recoverd patients, and the UK adult population (aged 18+) of 49.7m gives an annual cost of CFS patients of £1,072,000 million

This excludes extra costs for those more severely affected and costs for those under 18. However, around half of those aged 18-21 will be in full-time education, but these figures give you an idea of the likely overall costs: pretty big.

The figures are also based on those with an average illness duration of around 3 years, which might not be representative of the wider CFS population.

Of course, most of these costs are borne by the patient, not the state, but the state will have substantial costs though lost taxes and extra benefit payments, and higher healthcare costs. Then, of course, there are the human costs.

Yes, that struck me when I first read the paper: why not discount the first 6 months when therapy is ongoing. The Trial data clearly shows that fatigue and (self-reported) physical function were significantly higher in the second 6 months than the first 6 months. Also, any employment effect is likely to take a while to show, even for those in part-time work increasing their hours. It's a bit of a mystery to me.

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It's not as if it would be easy to miss: they only collected the Client Service Receipt Inventory (CSRI) data at 6 months and 12 months. So I'm inclined to think there wasn't much difference esp. when we can presume the authors would be inclined to highlight such an effect if it was "to their advantage".

PACE data implies annual Societal cost of CFS around £1 billion
Using the PACE data for baseline costs (just for CBT, but the other 3 groups were similar), which is £21,600 higher than that for recoverd patients, and the UK adult population (aged 18+) of 49.7m gives an annual cost of CFS patients of £1,072,000 million

This excludes extra costs for those more severely affected and costs for those under 18. However, around half of those aged 18-21 will be in full-time education, but these figures give you an idea of the likely overall costs: pretty big.

The figures are also based on those with an average illness duration of around 3 years, which might not be representative of the wider CFS population.

Of course, most of these costs are borne by the patient, not the state, but the state will have substantial costs though lost taxes and extra benefit payments, and higher healthcare costs. Then, of course, there are the human costs.

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Thanks.
How did you estimate prevalence? (I know it was a back of an envelope calculation, but what were the general figures?)

Thanks.
How did you estimate prevalence? (I know it was a back of an envelope calculation, but what were the general figures?)

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Prevalence from CMO's Working Group report, c2001, but interestingly tallies with a recent Nacul study too (Fukuda rather than CCC), the Jason study and isn't too much higher than the Reyes study either (0.24%). I think that 0.4% CMO's figure is as close to an 'official' UK figure as we have. UK population from recent census. You only have to ask if you want the spreadsheet

Prevalence from CMO's Working Group report, c2001, but interestingly tallies with a recent Nacul study too (Fukuda rather than CCC), the Jason study and isn't too much higher than the Reyes study either (0.24%). I think that 0.4% CMO's figure is as close to an 'official' UK figure as we have. UK population from recent census. You only have to ask if you want the spreadsheet

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Thanks. Given trial uses the Oxford criteria, one could make a case for a higher prevalence and thus higher total cost.

I know we've discussed this before, but it might be worth reiterating for those not following the thread closely.

Some useful info for us to take from the cost effectiveness paper is that CBT and GET resulted in no significant difference to:
1. The number of patients receiving welfare benefits and private financial payments (insurance and pensions).
2. The number of days of lost employment.

Obvious point that you will have all thought of, but it still may be worth posting:

In calculating the social benefits and costs, no attempt was made to consider whether promoting the notion that it is morally acceptable to lump all people diagnosed with CFS together and treat them on the basis of deconditioning and exercise intolerance theories of chronic fatigue syndrome, or the fear avoidance theory of chronic fatigue syndrome, will in itself cause social harm.

It's slightly galling to see the social benefits of these 'treatments' being touted, when no attempt has been made to assess the primary social impact that they have had upon many patients. There's such a lack of research in this area (psychosocial researchers seem rather uninterested in examining whether their work may cause more harm than good) that it's almost impossible to make this point in a suitably academic manner.

It is difficult to estimate annual costs on society based on the PACE Trial cohort. FWIW, the pooled average cost for all participants over the 6-month pre-randomization period is about £11,665 each. It did use a very broad CFS criteria, but it also recruited from secondary care. It did exclude the severely affected, but it also excluded some mildly affected. The average illness duration was about 3 years, which may skew the sample characteristics? In the introduction, McCrone et al estimated the prevalence rate of CFS at "0.2–2.6% of people worldwide". Assuming a population of about 60 million people in the UK at the time, this is about 120,000 to 1.56 million patients. I guess people under 18 and maybe even those over 65 too should be excluded from a cost-analysis? However, 240,000 is a commonly used estimate for the number of ME/CFS patients in the UK, which equates to £5.6B per year! This value was calculated from total service costs which adjunctive CBT and GET had no significant advantage over SMC alone, but results may differ slightly in larger samples.

Large reductions in general health costs: real improvement or just displacement?
Comparing healthcare costs excluding the PACE therapies (eg primary care, secondary care, Accident & Emergency) between pre-randomisation and post-randomisation shows substantial cost reduction across all arms of the trils - see table below. These cost reductions completely cover the cost of SMC and offset a substantial proportion of the other therapy costs. But are they genuine gains?

I can't remember where I read this, but at least some research has shown that non-trial healthcare use consistently falls in clnical trials of all sorts of therapy for all sorts of illnesses. The presumption is that if you are receiving regular therapy you are less likely to turn to other treatments eg complementary therapies, or further investigations of your condition. In the case of PACE, the SMC was specifically dealing with CFS symptoms through medication, displacing the need for some GP visits at least. I'm pretty sure the PACE trial also required participants not to start any other CFS treatment while in the Trial.

The authors have self-report in great detail on what type of healthcare professional participants were seeing (eg dentist, physio, neurologist, or MRI scans) so might be able to shed more light on this. But as things stand it's hard to know how much of the savings in healthcare are real (rather than displacement) and would be continued in future years.

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Good points Simon. Of course the reverse is true as well. PACE is operating in an ideal world. For a great many patients with our diagnosis no specialist care is taken up or even available. For some a trip to the doctor's is seen as pointless and to be avoided. PACE did not take into consideration - beyond it's remit - the need for medical help and support for benefits either. And if PACE were to be rolled out to one-and-all well the comparative cost would be prohibitive and certainly not cost-effective.

Obvious point that you will have all thought of, but it still may be worth posting:

In calculating the social benefits and costs, no attempt was made to consider whether promoting the notion that it is morally acceptable to lump all people diagnosed with CFS together and treat them on the basis of deconditioning and exercise intolerance theories of chronic fatigue syndrome, or the fear avoidance theory of chronic fatigue syndrome, will in itself cause social harm.

It's slightly galling to see the social benefits of these 'treatments' being touted, when no attempt has been made to assess the primary social impact that they have had upon many patients. There's such a lack of research in this area (psychosocial researchers seem rather uninterested in examining whether their work may cause more harm than good) that it's almost impossible to make this point in a suitably academic manner.

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The real social benefits for CBT and GET at the scale that they are talking about is that it would be a jobs stimulus creating employment for many therapists. However given it is ineffective its a very poor way of creating jobs.

To look at unemployment and jobs lost data they should compare there results to other groups being treated for long term illness.

Good points Simon. Of course the reverse is true as well. PACE is operating in an ideal world. For a great many patients with our diagnosis no specialist care is taken up or even available. For some a trip to the doctor's is seen as pointless and to be avoided. PACE did not take into consideration - beyond it's remit - the need for medical help and support for benefits either. And if PACE were to be rolled out to one-and-all well the comparative cost would be prohibitive and certainly not cost-effective.

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There is an important point which is both SMC and APT were sold to patients as helping them manage their symptoms where as CBT and GET were sold as cures. I wonder what the placebo effect would be between these.

Many GPs currently offer cost effective treatment in terms of the pace trial. They just dismiss their patients who never come back hence reducing the healthcare burden. As patients become invisible then social care costs become very hard to count.

I think a lot can be said about patients being kept in the dark of what is and what should be available to them, User. At a very basic level every patient who receives a diagnosis should be given by their doctor a patient's copy of the NICE Guidelines.

Then of course, they might ask 'Where's my nearest specialist service please?' or 'My wife is a severe patient so can you arrange for someone to come out to see her regularly at home please?'

We might not think what is on offer holds much value but if as a minimum it is being denied patients then how can they decide for themselves? How can effectiveness ever truly be judged of any treatment? How can more patients start asking for better?

... In the introduction, McCrone et al estimated the prevalence rate of CFS at "0.2–2.6% of people worldwide"....However, 240,000 is a commonly used estimate for the number of ME/CFS patients in the UK,

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Oxford criteria prevalence anyone?
Although I would expect the Oxford Criteria to have a higher prevalence than Fukuda, I'm not aware of any evidence that this is the case. The only prevalence data I know of for Oxford, Simon Wessely's, gave a UK prevalence of 2.4% - but the same study gave a Fukuda prevalence of 2.6% (that's the 2.6% in the McCrone paper) so that doesn't really help. 1 in 40 people in the UK do not have ME, whatever criteria are used. 2/3 of Oxford-Criteria patients in the PACE trial were also classified as Fukuda, and there would have been further Fukuda patients excluded because fatigue wasn't the primary symptom. So we are short on evidence that Oxford Criteria give much higher rates than Fukuda criteria.

Please let me know if I've missed somethig.

As I mentioned earlier, the 0.4% I used also tallies with a recent Nacul study, the Jason study from Chicago and is a bit higher than the Reyes/CDC study of 0.24% (all using Fukuda).The 0.4% figure is effectively the official government UK estimate, taken from the Chief Medical Officer's working group.

It is difficult to estimate annual costs on society based on the PACE Trial cohort. .. It did use a very broad CFS criteria, but it also recruited from secondary care. It did exclude the severely affected, but it also excluded some mildly affected. The average illness duration was about 3 years, which may skew the sample characteristics? I guess people under 18 and maybe even those over 65 too should be excluded from a cost-analysis? However, 240,000 is a commonly used estimate for the number of ME/CFS patients in the UK, which equates to £5.6B per year! This value was calculated from total service costs which adjunctive CBT and GET had no significant advantage over SMC alone, but very small savings may appear in larger samples.

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The PACE data is far from perfect but I think it's probably the best data going by some way, because it's a large sample with detailed costing data. To some extent mild and severe cases will balance each other out. The main cost is lost employment, and once you've stopped working extra severity won't add to that cost.

Good point about excluding over 65s who won't lose employment and in any case I think new cases of CFS are rarely disgnosed in older people because there are so many other possible causes of fatigue. Over 65s account for a further 16.6% of the UK population (21% under 18) giving a Working Age population of 39.2 million (based on latest census). A prevalence of 0.4% gives 157,000 CFS patients of working age. This gives a net cost estimate (excluding average health costs and lost employment for healthy population) of £3.4 billion a year for Working Age CFS patients.

[note: earlier figures too low due to incompetence. Posts corrected]

It's £billions a year, that's all that matters
I don't think the exact figure we use for prevalence matters too much, the resulting figures of £3 billion, £4 billion, £5.5 billion - they are all huge annual costs and should cause the UK Government to take notice: they funded the PACE trial (directly through the DWP and indirectly through the MRC) that provides that data for this so it will be hard for them to dismiss the findings. It does put the recent MRC funding for biomedical research into CFS of £1.5 million into perspective.

I think a lot can be said about patients being kept in the dark of what is and what should be available to them, User. At a very basic level every patient who receives a diagnosis should be given by their doctor a patient's copy of the NICE Guidelines.

Then of course, they might ask 'Where's my nearest specialist service please?' or 'My wife is a severe patient so can you arrange for someone to come out to see her regularly at home please?'

We might not think what is on offer holds much value but if as a minimum it is being denied patients then how can they decide for themselves? How can effectiveness ever truly be judged of any treatment? How can more patients start asking for better?

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I was just trying to point out that the minimum is often denied to many patients. I've had comments such as NICE guidelines are not clinical protocol so we don't need to follow them when trying to get the most basic blood tests done to check nothing else was wrong.

As I mentioned earlier, the 0.4% I used also tallies with a recent Nacul study, the Jason study from Chicago and is a bit higher than the Reyes/CDC study of 0.24% (all using Fukuda).The 0.4% figure is effectively the official government UK estimate, taken from the Chief Medical Officer's working group.

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The range that was (and still remains) applicable and used throughout the NICE Guidelines (based upon the CMO document) is 0.2-0.4% prevalence.

Since then of course there was the study commissioned in England that I think maintained a 0.2% prevalence based on CCC and did cite other prevalence rates based on other criteria. An interesting study if memory serves.

Anyway, when NICE and CMO produced that range I believe they claimed it was based on non-UK data as at the time no UK study had been completed.

The 2.6% prevalences we hear of from time to time like for example in that 'lost employment' study from Crawley and co. last year - predominantly associates 'chronic fatigue' with their entry criteria. At least that's how I have come to differentiate them.

Such usage appears to me to lend itself to the notion of 'fatigue centres' to help 'fatigued people' regardless of their actual clinical diagnosis.

I'm no longer very good at specifics when trying to remember facts but that English study might have indicated where the 2.6% actually stems from. It was a good paper I thought but I don't know what impact it will have.

Whichever way you think about it adopting a 0.2% prevalence will see the oft-quoted 250,000 drop quite dramatically. And we aren't talking about a prevalence of 'ME' either - this was based on CCC ME/CFS.

It's a consideration I don't think we perhaps take enough notice of sometimes.

Quick comment on the higher than usual prevalence estimates in the Wessely et al paper.

High estimates can be caused by the failure to give potential patients a medical assessment, but it seems that some sort of medical assessment was provided in this particular study. However, at first glance it is unclear how they diagnosed psychiatric conditions which are exclusionary to CFS criteria. Without reading the paper more closely, I have a suspicion that everyone who met CFS criteria was included regardless of psychiatric exclusions. The CIS-R was then used "to determine the presence or absence of psychiatric disorder and as a continuous measure of psychological morbidity".

It is strange that the prevalence estimates of CDC (1994) criteria was higher than Oxford criteria (before accounting for psychological comorbidity, but not after it, then it is lower and more like the difference seen in the PACE Trial between these two definitions of CFS). I can think of two complementary explanations for this. First, although Oxford criteria does not require additional symptoms, IIRC it does specifically require both mental and physical fatigue, whereas CDC criteria does not. Second, the CDC criteria requirement of 4 out of 8 vague optional symptoms does not reduce prevalence when not accounting for psychological comorbidity, because these are very common in psychiatric diagnoses too.

Quick comment on the higher than usual prevalence estimates in the Wessely et al paper.

High estimates can be caused by the failure to give potential patients a medical assessment, but it seems that some sort of medical assessment was provided in this particular study. However, at first glance it is unclear how they diagnosed psychiatric conditions which are exclusionary to CFS criteria. Without reading the paper more closely, I have a suspicion that everyone who met CFS criteria was included regardless of psychiatric exclusions. The CIS-R was then used "to determine the presence or absence of psychiatric disorder and as a continuous measure of psychological morbidity".

It is strange that the prevalence estimates of CDC (1994) criteria was higher than Oxford criteria (before accounting for psychological comorbidity, but not after it, then it is lower and more like the difference seen in the PACE Trial between these two definitions of CFS). I can think of two complementary explanations for this. First, although Oxford criteria does not require additional symptoms, IIRC it does specifically require both mental and physical fatigue, whereas CDC criteria does not. Second, the CDC criteria requirement of 4 out of 8 vague optional symptoms does not reduce prevalence when not accounting for psychological comorbidity, because these are very common in psychiatric diagnoses too.

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There's a separate thread covering this paper. Amongst other things it seems the Wessely study didn't either take a full medical history or give a medical examination, instead relying on reviewing existing GP notes. And amazingly the fieldwork was conducted before the CDC/Fukuda criteria were agreed and published, which makes you wonder how they managed to gather the right data. I'm not sure it's safe to read too much into their findings

The 0.4% figure is effectively the official government UK estimate, taken from the Chief Medical Officer's working group.

This gives a net cost estimate (excluding average health costs and lost employment for healthy population) of £3.4 billion a year for Working Age CFS patients.

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Hi Simon, this figure matches the world data better too. It costs the US somewhere in the vicinity of $25 billion. Thats not pocket change.

I have also used the 0.4% figure. One thing that worries me though - the cost data probably represents the cost for people more typically representing the 2.4% group. In other words, it might not be representative of more strictly defined patients. Its what we have, but I still think its not good enough for proper analysis.

Hi Simon, this figure matches the world data better too. It costs the US somewhere in the vicinity of $25 billion. Thats not pocket change.

I have also used the 0.4% figure. One thing that worries me though - the cost data probably represents the cost for people more typically representing the 2.4% group. In other words, it might not be representative of more strictly defined patients. Its what we have, but I still think its not good enough for proper analysis.

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Problem is, we don't really have a '2.4%' group as the (Wessely) study that found 2.4% for Oxford Criteria also found 2.6% for CDC/Fukuda. I've highlighted a relevant earlier post on below. The CDC-Empirical criteria study (Reeves 2007??) found a prevalence of 2.5%ish but those criteria make the Oxford ones look rigorous.

If you do know of studies with decent data on Oxford-criteria CFS prevalence that would be enormously useful. Otherwise I think what we have for now is good enough - given that even a 50% error wouldn't stop it being a very large amount of money involved.

Oxford criteria prevalence anyone?
Although I would expect the Oxford Criteria to have a higher prevalence than Fukuda, I'm not aware of any evidence that this is the case. The only prevalence data I know of for Oxford, Simon Wessely's, gave a UK prevalence of 2.4% - but the same study gave a Fukuda prevalence of 2.6% (that's the 2.6% in the McCrone paper) so that doesn't really help. 1 in 40 people in the UK do not have ME, whatever criteria are used. 2/3 of Oxford-Criteria patients in the PACE trial were also classified as Fukuda, and there would have been further Fukuda patients excluded because fatigue wasn't the primary symptom. So we are short on evidence that Oxford Criteria give much higher rates than Fukuda criteria.

Please let me know if I've missed somethig.

As I mentioned earlier, the 0.4% I used also tallies with a recent Nacul study, the Jason study from Chicago and is a bit higher than the Reyes/CDC study of 0.24% (all using Fukuda).The 0.4% figure is effectively the official government UK estimate, taken from the Chief Medical Officer's working group.